Monday, February 24, 2020

Comments by Mrs.Spero

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  • I have Lupus and very BAD Trigeminal neuralgia. My doctor is wonderful. I can’t take Gabapentin. I have serotonin issues and it made me crazy. I am on an opiate which my doctor has given to me. He has me taking it in a certain way so that I am benefiting from it, because my body is unique-as everyone’s is, he sees that we are not made from one cookie cutter. And yes, it is working on the
    Trigeminal neuralgia. So many doctors will tell you opiates don’t work on that kind of pain. Not true.
    If doctors were allowed to MOLD each treatment to fit each of their patients needs it would be wonderful. Funny thing when doctors were told to treat pain aggressively I was on a large dose-1 to 2 pain pills every 3 to 4 hours. I NEVER became addicted nor did I crave the medicine. The other thing was because I was trusted and allowed to make some decisions on when I would take my meds, I had more control. I felt good and was able to stop my panic meds. Of course, now that dosage would be considered excessive, but I was on that amount for years and never took more than needed.
    If doctors made us feel safe and trusted it would be a whole different world. I may be on a much lower dose now, BUT if I ever felt I was becoming addicted I could tell my doctor. He would help in every way possible. You see, it goes back to the patient and doctor making those decisions and nobody getting in between that relationship. I have some very serious pain. I don’t talk about it much, but I am pretty much encased in a pain-riddled body. All my muscles, face, neck, shoulders, arms, legs, back, feet and hips. (very long story) Before I met my current doctor, I went to at least 15 doctors. I gave up. The way I started thinking was so scary. I was now home bound, and could not even talk with my kids. My thought was “Well I am going to die. Once I die they will do an autopsy..and THEN THEY WILL HAVE TO BELIEVE ME”. I was that way for several years. Another thing we don’t talk about much, is that it isn’t JUST the physical pain, it’s what it does mentally. It’s like having someone singing the worst song you have ever heard in your head forever. Sounds funny but think about it- He is singing while you try to watch TV, eat, hold a job, sleep, take a shower and so on. It’s a different version of the Chinese water torture. People can only take it for so long before they explode! Some look to street drugs to relieve the pain- others, desperate to end their suffering, choose to end their lives. You are then not just looking for pain relief, but relief in your head.
    Sticking people on depression meds is COMPLETELY the wrong thing to do, but as long as the doctor is giving them “something”, they are treating them right? It looks good for them. In my group online, we have had over 14 suicides in the last year. And no, these are not people in crisis because of withdrawal or because they couldn’t get high. I did a survey for myself. I asked 300 people in my group if any of them were on depression meds, instead of pain meds. Out of 300 people, 274 were on one form or another- (Paxil, Zofoft, etc). Out of the 274 , 256 had no idea why they were on them. They were all assured it would alleviate their pain, yet only 3 said it might be helping. 268 felt they were not themselves on the meds. Only two felt they had actual depression, but the pain was not relieved with anti-depressants. When you have your pain medication taken from you, your whole life changes in 24 hours. You are not even given time to figure out what to do with your life. The whole thing changes in a few hours. I think it’s pretty normal to be scared and sad when this happens. It’s not depression, but a natural reaction. When you are diagnosed with a disease, at least you have time to get things in order. When your meds are taken you have no time.
    I own a very successful business, I have to move around a lot. I’m also a very high functioning person. Take away my medication and in a day I lose everything. I become a person who can not concentrate. My day moves from thinking about my next design to really nothing. Just crying, exhausted, and in pain. I can not even concentrate on TV shows or reading a book. It is a terrifying thought. Funny thing, all these groups and media personalities will talk about opioid use, but it’s very one sided. I run 3 groups. There are well over 5000 pain sufferers in these groups. Not one of us has ever been asked to do an interview. I’ve invited hundreds to join my groups to hear the other side -the pain sufferers’ side. Nobody will take me up on it. There are many of us. We are being abused, called names and made to feel very small because we have chronic pain. BUT we are starting to come out. We just are not a fearful anymore. We WILL find a way to be heard. If this doesn’t stop, in a few years we all will be on heavy depression meds, in pain and jumping off bridges in mass amounts. You can only be tortured for so long.